Conversation about Julia

My good friend Karin emailed me today to tell me about a very sweet conversation she had with her kids about Julia.  I wanted to post it because I want to keep and remember all the ways the memory and impact of Julia's life lives on.  It is a blessing and comfort to me despite all the pain that surrounds it. Thank you, Karin, for taking the time to email me today.  

So the kids and I were talking about sewing which led to talking about how Josiah and I made that quilt for Julia before she was born and Josiah was not yet three. That led to about half an hour of questions and talking about Baby Julia, her life, her health challenges, what you did to care for her, what happened when she died, and that we'll see her again someday. The questions were so specific and they were so interested and attentive. And Hope didn't know what to think when I started to cry as I talked about how we thought she and Julia would grow up together. 

It was so lovely and sweet. Sadly sweet. It just seemed you should know how much Julia was part of our day today. I'm still in tears. 

Love,

Karin

Karin's kids and Julia's life are forever intertwined because Karin's daughter, Hope, was born just 5 days after Julia and Julia died on her son Josiah's birthday.    

Not forgetting

Today 4 years ago Julia's heart beat for the last time.  I was there holding her.  I will never forget.

Life tends to take over and I think it especially tries to take over on significant days when I am supposed to stop and sit and reflect.  Today of course has been crazy.   I had a 2 hour meeting this morning with a woman who is helping me with my credential coursework.  I had 10 minutes to drive from that meeting to an hour long meeting with the child psychologist we just started seeing in regards to Mattie's recent ADHD and dyslexia diagnosis as well as in regards to her transitional issues with moving here to Colorado.  I have assignments I am supposed to be working on and I need to leave to go pick up Mattie from school and then take her straight to the community center where she will do her homework and take her tap dancing class.   It is non stop.

But I decided I would sit here and post on Julia's blog today by hell or high water because I feel I owe it to myself and I owe it to Julia.  I did get to tell the child psychologist our whole story today.  I brought my picture book that I made of Mattie and Julia and our family.  It felt good to share our story... of miscarriages and infertility and of Julia and her life and death.  I got to tell her what an impact Julia's life has made on other people's life.  I got to share how Bob and I stayed steadfastly committed to one another despite all the stress.  And I got to share how God was foundational in it all to giving us the strength to make it through to where we are now.  I also got to share that I plan to have some serious conversations with God when I get to Heaven because I still have a lot of questions that will not get answered here on Earth.  I got to be real and I got to share.  It helps to share because it gets it out.  It is nice to be known by someone else in a place where hardly anyone knows me at all.  So far, around here, I mostly carry my story alone.  Over time that will change... but for now that is the way it is.

So today, despite that fact I still feel like a chicken with my head cut off half the time, I am remembering Julia and all the events that happened today at the time that they happened.

I will not forget.

An unexpected email from a Lucile Packard staff member

I could not believe seeing Mandi's name in my inbox this morning!   She and I had several heart to hearts during Julia's time at Lucile Packard and she was very supportive of our family.  I have not spoken with her for at least 3 years!  It is amazing she found my email AND took the time to email me!   It is so significant and meaningful to me knowing the Julia is still alive in the thoughts and hearts of others and her life is still making an impact.  I truly believe that God does not waste a single life and I have been shown time and time again that Julia's life was truly special and significant.  


Dear Val,

Many years have passed and I just wanted to drop you a quick line that I still think of Julia and your family and I hope that you are doing well.  I imagine Maddie is in grade school now and I hope you are still enjoying Tahoe. 

My husband's work has taken us to Denver and I miss Packard and the many families and colleagues I knew there.  I've been meaning to email you for quite some as I wanted to share something with you.  During my last weekend at Packard, I met a wonderful family and I shared with them an unexpected Down's diagnosis in their new daughter.  I don't think I have the adequate words but I truly believe that because of my experiences with Julia and your family, I was able to help this family in a way that I wouldn't have otherwise been able to.  Your little angel, Julia, is continuing to do good things at Packard!

My very best wishes, 

Mandi

Remembering Julia 3 years after her death

It was a very rainy day today.  All I could think about was that the sky was shedding tears for my sweet Julia.  I was feeling sad, too.

I struggled to get to get to sleep last night.  I kept replaying in my mind the last night with Julia.  It was a rough one.  Julia took a huge nose-dive around 7:00pm.  She woke up in the middle of the night and was clearly agitated.  Her breathing also became more labored and she would gasp for air from time to time.  It was absolutely horrible.  I just remember getting up in the middle of the night to feed her with the pump and being so exhausted and Julia being so agitated and saying to God, "Lord, I just don't know how much longer I can do this!"  I was just so tired physically and emotionally.  I had no idea it was my last night with her.  It is horrible to relive those kinds of things.  One would think that I wouldn't want to.  But the irony is that I do.  I don't want to forget.  Keeping all the details alive keeps Julia alive in my heart.  I think it is important and significant to remember.

It was our plan to leave right from church to drive to Julia's bench at Mt. Hermon.  However, it was raining harder than ever when we got done with church so we decided to delay an hour or two.   The rain did eventually die down a bit and so after lunch we hit the road.

The drive to Scott's Valley over the Santa Cruz mountains wasn't too bad, overall.  As we climbed up highway 17, it got progressively more misty and foggy.  And as we pulled into Mt. Hermon, it was raining steadily.  We decided at that time that we would drive into Santa Cruz and buy some time.  Mattie had gone to the Seymour Marine Lab on a field trip earlier that week and was given a free kids pass to come back.  So we decided to go check it out.  Amazingly, it was not raining in Santa Cruz and the museum was not too crowded.  Mattie enjoyed showing her daddy all the things she had seen on her field trip including petting the shark and exploring the touch tank.  Also included in the admission was a tour to see the dolphins and learn more about the marine lab.  It was cold and breezy but not raining so we decided to do it.  At the museum, I was feeling very happy.  I was thinking that even if we didn't get to Julia's bench due to the weather, it made me very happy that we were having a special and fun time as a family.  For me, that was part of honoring Julia.  It was about being intentional about setting aside time to do something special.

Here is a photo of us at the museum:

We left the museum and thankfully it was not raining we we returned to Mt. Hermon.  We brought a towel and walked to the bench.  When we got there we wiped down the bench to dry if off so we could sit on it.  It looked very clean, almost like someone had cleaned it recently.  It also looked like they had pruned the ivy and other bushes around it.  That was very nice. We didn't spend long at the bench.  But it was nice to have visited.

Finally, we left Mt. Hermon and drove to Ben Lomond to the Tyrollean Inn, a German restaurant we like to visit when we're in the area.  Mattie especially likes it because they have a kids' area to play in an enclosed "outdoor" patio area with heat lamps.  That is where we ate.  During dinner, I asked Mattie to tell me what she remembered about Julia.  She remembered that she has bright red hair and that she had to eat through a tube in her nose.  She couldn't remember a lot.  I told Mattie at that point, that I understood that she was very young when Julia was alive and when she died.  She was only 4 years old.  I told her that I thought it was important that we always took some special time to remember her because I didn't want her to forget about Julia, that I wanted her always remember that she had a sister.  She told us that she sometimes wished she had a sister and that sometimes she is lonely, especially when Bob or I are busy doing other things.  I told her that we tried very hard to give her a sister but that my body just didn't make babies very easily.  I told her how much we wanted her to have a sister.  But I also told her that for some reason it was not hard for my body to make her and that she was my very special little girl.  I teared up when telling her that and she teared up, too.  It was a special moment.  We ended our meal with some yummy dessert to share and then drove back over the hill home.  By the end of the day I was pretty emotionally exhausted but feeling very satisfied and content and happy with how the day turned out.

Julia's "3rd" birthday...

Sigh... Looking at Julia's blog, it is sad that I don't ever post much on it. Honestly, I am just not as good about blogging in general these days.  I allow myself to get sucked into the tyranny of the urgent and I don't devote the time I used to for quiet reflection and contemplation.  But it is days like today that make me stop and sit and reflect.  Today, Julia's 3rd birthday.

I like to go through the mental and emotional exercise of remembering all the moments from the day. In my mind I just don't ever want to forget.  So forgive me.  I am going to take a moment... a long moment, actually... and replay that day 3 years ago today.

What a day it was, too, three years ago.  The day before at my last ultrasound appointment at Lucile Packard I was told that they thought Julia was measuring only 4 lbs 12 ounces, which meant that she basically had hardly grown at all in a month.  They also thought that there might be an issue with the umbilical chord.   So basically they admitted me to the hospital right then and there... No hospital bag, no jammies, no toothbrush, nothing.  Bob was with me and Mattie was at a dear friends who graciously kept her through dinner and into the evening until Bob could go get her.  I was freaked out.  I was not ready.  I had 3 more weeks until my scheduled c-section.  I was scared!  I was not ready to bring a child with Down syndrome into the world yet.  And that she was only 4 pounds and not growing I thought the worst!  I cried.   I was checked into a shared room for the night with another woman on hospitalized bed rest.  I never even saw her.  Our curtains were between us.  Late that evening long after Bob left to be with Mattie,  my dear dear friend Karin came by to spend some time with me.  She was pregnant and a week over due!  She came and got in bed next to me.  It was quite a sight, two huge preggos sitting in bed next to each other!  I wish SO much that I got someone to take a photo of us.  The nurse came in and was quite confused not knowing which one of us was the patient!  We still laugh about this.  Because she is a pastor she was able to stay past visiting hours.  It was good to be with her.  Then thanks to Ambien, I slept.

The next morning they told me that I would be having my baby around noon.  It was a Friday.  Bob got up to the hospital not long before I had to start all the prepping for the c-section.  Like any surgery, it takes a while.  It's a lot of waiting.  I was not a glowing expectant mother anxiously awaiting the arrival of her baby.  I was nervous and scared.  I was fearful there was something terribly wrong with my baby on top of the fact she already had Down syndrome.  I was not happy that she did not have the extra 3 weeks to "bake" safely in my belly and get stronger and develop.   I had Bob take some photos of my belly... my last photos of me pregnant.  This made me very sad.

Then it came time for the c-section.  I had a c-section with Mattie.  This was no big deal to me.  My c-section with Mattie was a piece of cake, honestly.  I recovered quite quickly.  So that part did not make me nervous at all.  They wheeled me in.  I was "paralyzed" at this point from the waste down.  There were heart surgeons in the room ready to whisk Julia away to immediate heart surgery if necessary.  There were generally a lot of people in the room.  Operating rooms are horrible places.  They are bright and they are cold and they are sterile.  Fortunately, the nurse I had was so awesome!  She talked me through everything.  I had told her that I am not grossed out by any of the details and that I wanted her to dictate to me everything that was happening.  I love hearing the play by play of what's going on.  I want to know!  She told me what the doctors would say right before they pulled the baby out so I could be listening for that.

And that is exactly what happened.  I don't remember what those words were, but I remember hearing them and then hearing Julia's cry!  I was SO happy!  Her cry was SO STRONG!  It was LOUD!  This was not a weak baby!  She was a fighter!  Before I got to see her a group of doctors and nurses had to analyze her and check her out on a table I could not see.  No, I didn't get the beautiful moment of holding my baby the moment she was born.  Bob was able at this point to go over and see her.  He came back to report that she was NOT 4 pounds.  She was 6 pounds 7 ounces!  The ultrasound techs were SO wrong!  They were off by almost 2 pounds!  Bob said to me, "When I saw her I said to myself, 'That's no 4 pound baby!'"  I was so happy I cried and cried.  She was going to be okay!   And the other thing Bob told me... she has RED HAIR!  I could not believe it!  I was elated!  It was such a joyous moment for me.  I was so relieved.  I was praising God and I had hope for our future with Julia for the first time.  Her Apgar scores were high- 9 and 10!  We were going to be okay.

And then I FINALLY got to meet her and hold her myself.  She was beautiful.  And Bob was by my side.

That day I it was a good thing that I had no idea what the future would hold.  That is God's Grace.  So here we are 3 years later.  Though I know I think about Julia every single day, I don't think of her quite as often and with the same amount of length and intensity.  I used to be very aware of the 18th (her birthdate) and the 8th (her death date) every month that passed.  And I used to count the months since her birth and her death.  I don't really do that anymore.  Life has moved forward and there has certainly been some healing of the wound in my heart.  However, certain things will trigger memories and I will get very sad.  Or I will think of her and my eyes will tear up.  Thinking of Heaven and being separated from her can make me cry.  Songs of Heaven make me cry.  But most of my days are busy and happy these days.  Mattie helps with that a lot.  I have jumped into her life with 2 feet and she and Bob are the center of my universe.  After loosing a child it makes one remember what is truly important.  I try not to take my time I have with Mattie or Bob for granted.


We had a nice day remembering Julia today as a family.   Mattie had school in the morning and we had her parent-teacher conference at 11:30am.  Bob got laid off last week so he was now free to spend the afternoon with Mattie and me.  So we had lunch out at Mattie's pick, McDonalds, and we headed to Mt. Hermon to visit Julia's special bench.  We have been so appreciative to have that bench as a place we can go to remember Julia. It is such a beautiful setting in the woods- a place that fits our family perfectly. Because it is outside in the woods, it naturally gets very dirty. So today we brought cleaning supplies and we all worked together as a family to make Julia's bench clean and shiny and a welcoming place others can sit and enjoy. It was great. Even Mattie was very happy to chip in.  

I posted on Facebook photos of the bench earlier this evening.  One of my Facebook friends whom I have not seen in over 8 years sent me this message: 

Valerie, I just saw the photos of Julia's bench. Our family has sat there several times, not knowing it was your daughter's. And, also not knowing whose family it was, I have prayed for "the parents" and the weight of losing a precious child, for the possible strain on their marriage, and for the extended family this would undoubtedly touch. I can't believe I'm learning now that I have prayed for you, completely unknowingly. I hope this will bring you some unexpected blessing today - of most difficult days. Lots of love to you, your sweet family, and of course your two very precious girls.

Her message to me meant so much!  I have often wondered if when people sit and rest on that bench if they even read the plaque that was on it.  Additionally, I have wondered if they read the dates on it and made the connection it was a memorial bench for a baby.  It warmed my heart to know that at it had touched at least one person's life and it even happened to be someone I know!  So there must be many others whom I don't know.  To that I am thankful.  It makes me happy that Julia is remembered, even by people who don't know who she is.

Happy birthday, precious Julia.

"It smells like Stanford"

I took Mattie in to see her doctor this evening.  She's been complaining about her tummy "feeling funny" for a couple of weeks now.  No other symptoms, just her tummy feeling "funny."  I was trying not to think anything of it, but after 2 weeks, I decided for my own peace of mind to have her see the pediatrician.  Well, nothing important to report. Everything with Mattie is probably fine.  The appointment itself is not why I am writing a blog post.  It is because of what happened on our way out of the medical center in the bathroom.

On our way out, Mattie said she had to use the bathroom so we found one near the front door.  As soon as we stepped inside the one-person bathroom and locked the door, I was immediately struck with a flashback to Lucile Packard Children's Hospital.  It smelled JUST like Lucile Packard where Julia was born and spent 8 of her 11 weeks of life.   Well, mostly it smelled like the rooms where Julia stayed.  It was uncanny.  Meanwhile, I am helping Mattie and keeping my thoughts to myself.  After Mattie uses the toilet and as she is washing her hands at the sink she casually mentions, "Mom, this bathroom smells just like Stanford."  I was kind of blown away.  She REMEMBERS!  It almost made me cry.  I responded that I was thinking the exact same thing!  I wanted Mattie to be validated in her observation and I wanted to make it a connection point between us.  We both shared this memory together.  We agreed that one of the contributing factors was the smell of the soap that was in the dispenser.  We had a chuckle about it together.  But somehow, it was even more than just the soap.

I just couldn't believe Mattie made that connection.  I am sure that Mattie remembers much much more of Julia and her life than I am even aware of.  She hardly every brings up Julia or talks about her.  I almost feel like it is intensional on her part.  But I don't know.  But for her to say that meant a lot to me.  It means that she does remember.  It is sad that one of the parts she remembers about her sister is the smell of the hospital where Julia spent most of her life.  But she remembers nonetheless.

It was also tough on me to be transported back to that time.  It is also sad that the smell of Lucile Packard is permanently etched in my brain due to my daughter having to spend most of her life there.